Recognizing Celiac Disease: Reader Letters

Read below for comments and stories of how people's lives are being affected by this book. Initially written to improve diagnosis of celiac disease, it is doing that and much more...it is helping people recover their health and reclaim their lives.

Here is what they have to say...

Having been dx with CD for one year, I reached saturation - almost overload point a few months ago. Then I read the summary of "Recognizing Celiac Disease" and felt it might encompass everything I had referenced across numerous articles and books - and more. I love being able to look in the index and go to detailed information in my struggle to ensure my nutritional requirements and deficiencies are being met and addressed. If I won the lottery, my first step would be to send a copy of this book to every family practice and GI physician in Texas! Short of that, I plan to buy a copy at the GIG National Conference in TX in June for my local FP clinic! ~Reta McCallum, TX
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Cleo: Your book is fantastic. I was diagnosed with Celiac disease 2 years ago. I purchased books and did quite a bit of on line research about Celiac disease after my diagnosis. I was somewhat knowledgeable about Celiac Disease when I purchased your book. I found your book to contain a wealth of informaton about Celiac that is not available in any other book. It may sound strange, but your book helped me to understand my life a bit better. I now understand what was going on inside my body when I exhibited various symptoms over the years, prior to diagnosis. Knowing what was going on and realizing that I was not weak or lazy or just plain nuts has made me feel better about who I am. Thanks for that. Thanks so much for your wonderful book. ~Deb C.Via Internet
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I am an RN that is married to a man with Celiac Disease. We lead the Gluten Intolerance Group of Grays Harbor. The book has been used to clear up the "is this related to celiac or is there something more" questions. A friend from work told me that her son in his 30's had "Parkinsons", using information that I had read, and the book "Recognizing Celiac Disease", they chose to adopt a GF lifestyle. Within two weeks he went from needing assistance to eat, to pouring from a tea pot without spilling. The mom as a show of support went GF and noted that the horrible itchy rash that she had suffered from disappeared-only to appear again with any ingestion of gluten. The young man's employer-an audiologist who specializes in auto-immune ear disease, borrowed the book for a full month so he could go through it page by page.
~Kris M.RN BSN CEN, Clinical Documentation Specialist, Quinalt, WA
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I loved your book! I thought it was very comprehensive and detailed. The resources all in one place are amazing!
Thank you! ~Michelle M.Chicago, IL
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I have used it to emphasize the many nutritional deficiencies that may occur with Celiac Disease, and the GI docs I work with are now routinely testing for Vitamin and mineral deficiencies. We found our first zinc deficient pt recently!The explanation of the disease in the first section of the text has also been useful in helping members of our support group understand the disease.
Sincerely,
Patricia C., PA-C, Virginia Beach, VA
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Recognizing Celiac Disease is a great resource guide that I use to help my customers identify their symptomology and what may be a related cause. It is easy to understand, informative, and very user friendly. I would recommend to anyone, including those who use it on a professional level.
Paul KeltyMr. Ritt Bakery, Philadelphia, PA
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Hello Cleo, What I loved most about your book is addressing the needs for micronutrients. Secondly, when I showed a dear friend with sarcoidosis the simple statement in your book that "sarcoidosis responds to a GF diet" she believed it and the research behind it and tried it ~ and subsequently feels much better. Be assured that you made a big difference in this woman's life! Thirdly, your material on hyperparathyroidism is likewise helpful and I have showed it to several of our group members with this additional diagnosis and they have since added Vit D to their regimen (under their dr's approval) with an increase in well-being. Warmly,
Cheryl Hutchinson, RNChair, Gettysburg Gluten-Free Group, hutchjc@earthlink.net
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Thank you. My husband and I both have CD and your book is by far the best one we have found in print on CD. We love the format with the concise, current overview in the beginning and the detailed charts that make up most of the book. We refer to it on a regular basis as we research questions for ourselves, friends, family and others.
We shared your book with the head of the pathology dept. at our local hospital, our CD support group members at our last meeting (and encouraged them all to purchase their own copies) and even with our dentist.
I wish there were a way to get your book to all of our local doctors since none of them are informed about CD and few people are diagnosed in our area. My doctor had never dx'd a case of CD before mine (I was on my deathbed 6 years ago), and our pediatrician has never dx'd a case!

I have proposed that our support group purchase books for all of our local gastroenterologists, providing you are not planning to publish an updated version in the near future.

If there is any way you recommend that our support group, or we personally, can promote your book please let us know.

Thank you again!

Suzanne LudlamFairfax, VT
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Hi Cleo -
I read through Recognizing Celiac to confirm what washappening with my daughter's symptoms. When she washaving a variety of strange symptoms, joint pain, skinproblems, diarrhea, weight loss and yellowing teeth noone was putting it together and guessing celiac. Now we are having relatives with some similar symptomsso I am showing them your book and encouraging them tobe tested for Celiac. I passed the book on to ourlocal pediatricians because I had been told by them"She does not look like a Celiac". She was diagnosed2 years ago and is feeling great because she follows agluten-free diet all the time. Thanks for educatingfolks and letting them read about all the possiblecomplications/ symptoms of untreated Celiac.
Mary M.Monterey, MA
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I especially enjoy the table which lists the dietary sources of specific nutrients (both animal and plant specific). I use it to help patients see where deficiencies may exist if the diet is not well-rounded. Vegetarians find it extremely beneficial to their individual understanding... I keep several pages tagged always for reference. ~Linda H., RD, LNBozeman, MT
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There are finally a lot of good Celiac Disease books out there. Cleo Libonati's Recognizing Celiac Disease is the best, by far the most thorough and researched--but unfortunately the hardest to obtain.
~Dale Adams, Dixon, CA
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The book helped me personally in evaluating whether I have celiac disease and broadening my understanding of the wide variations of possible symptoms. It turns out I don't have celiac, which was determined by genetic testing, but the book was a good first step in getting me moving forward towards that end result. I am also a dietitian, so it is helpful professionally.
~Pat S., Fort Washington, PA
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I have greatly benefited from your book! It is such a comprehensive invaluable resource. I am myself a celiac diagnosed in 2003, and I am also a Physician Assistant practicing in Gastroenterology. Your book has really improved my awareness of specific nutritional deficiencies that potentially come with the diagnosis. I feel I am doing a much better job of assessing my patients. Since I also have Crohns patients who can have the same issues with malabsorption if they have small bowel disease, it has been helpful to understand them as well. I am very grateful to you for your efforts. I am positive that it was a very challenging task to assimilate all of that information!
Best regards,

Michelle E., PA-CGI Specialists, 20375 W. 151st Street Suite 354, Olathe, KS 66061
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I am a physician and use the book whenever I suspect or diagnose celiac disease, to remind me of the basics but also of the many potential subtleties and traps in the diagnosis and treatment of this disease. It is very clear, comprehensive and helpful; until now, I had never seen so much information on the disease in one book, and that makes my life easier. Thank you !
Pierre R., M.D., Montreal, Quebec, Canada
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I thought the book was welll written and very complete. As both a nurse and a person with gluten intolerance it gave me all the information I needed to discuss options with my doctors.
Thank you,
Bettsy B.Waverly, IA
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Thank you so much for publishing this wonderful book. For me, because I have been involved with the disease for so long (37 years), it has been a godsend in relaying accurate and up to date information to the members of The Gluten Intolerance Group. As one of the founders of GIG I learned under the tutaledge of Dr. Elaine Hartsook and have had the opportunity to know and work with many of the leaders in Celiac reasearch and medicine. I do not have a medical background but have absorbed much over the years while attending conferences and symposiums all over the world. That said, I found your book so very informative and specific in the areas that we celiacs and medical professionals need to be. I have almost worn my copy out by lending it to physicians and dietitians and members of my Support Branch of GIG. I just hope these people, professionals in particular, are ordering this book for their reference libraries. I have spent hours and hours reading, and trying to remember, the Nutritional Deficiencies of Celiac and finding out, by the Signs and Symptoms Section, that I started manifesting symptoms when I was as young as two or three years old. Unfortunately, I was not diagnosed until I was 24 years old and at death's door. I only wish this book could be a part of every Gastroenterologist's, Dermatologist's and Dietitian's Library. Once again, thank you for taking the time and effort to publish such a well organized and statistical book. I have and will continue to recommend it to all of my associates. ~Susan E.Branch ManagerKitsap/Olympic Peninsula, Gluten Intolerance Group, Sequim, WA
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Hello Cleo, First Thank you for organizing all the info that you have in this book, that has been the most valuable area for me as a Nutritionist. I was finally able to show my patients how their Gluten Sensitvity is causing some if not all of their other issues. We have a staff copy here in our clinic, and I have my own copy for my client use. Thanks Again for this great and very informative book.
~Cheryl B., CCN, CCHBoulder, CO
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I use your book as a reference when trying to figure out nutritional deficiencies caused by longstanding malabsorbtion. I have learned a lot from it and solved several problems. I look up information and then try supplements to see it they resolve the symptoms. It's a useful book and it has helped me become healthier. My medical doctors are no help on nutrition; they don't realize the implications of celiac disease on nutritional status.
Pat H.Lafayette, CO
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We are using the book for education purposes for our Dietetic and Culinaryand Food Service students to make them aware from the industry side howthey need to be aware and to teach them how important it is to incorporategluten free items on their menus.
Jo T.South East Community CollegeLincoln, NE
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Hello Cleo - I am hoping to meet you some day!! I just did a book review of your book for our chapter last Sunday. I tell everyone at our chapter - buy this book for your doctor for Christmas!! I just picked a few signs, symptoms etc. to talk about it. One was migraine. One new member said "I had a migraine for 2 months and no one said anything about celiac disease". (She was later diagnosed at gallbladder surgery....) I have found the book an excellent resource for use in answering new members questions or questions from people who think they may have celiac disease.
Personally, I was most fascinated by the information on the malabsorption of Omega 3 fatty acids. I had not seen this information before. For me personally, the most relevant information was about the impact that vitamin D malabsorption has. It took my doctor awhile to figure out that I was very low in vitamin D. Had I had this book sooner, I might have figured that out earlier and lessened the impact on my bone density. ~Judy B.Past President, Greater Kansas City Chapter #4, Celiac Sprue Association, 'Celiacs Helping Celiacs', www.csakansascity.org
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To Cleo,
I was so grateful to have met you and am enjoying all the information in your book. The quick reference format is helpful for us in the office to help justify testing for those patients that we suspect of having Celiac. On the test requisition form for Prometheus or Kimball we have to come up with appropriate diagnosis codes. We are working hard to educate our local physicians.
~Gretchen M. OTR/LBoca Raton, FL
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Hi Cleo,
I particularly liked your book because it was so concise and well researched. I have a background in technical writing, so I know how long and hard you have worked on your tome. I have referred to it when others in our group have a question. I know I have had to check word meanings occasionally - for me, that's the mark of a great book - I can understand and visualize the sequences. Your charts were extremely clear and specific. I do think the part that tives me the most pleasure is carrying it into the doctor's office and plopping it on his desk. I haven't had one who was even curious about it - including my gastro. I did show parts of it to the endocrinologist and he appeared to look at the graphics - but only briefly. I do find that I am able to converse at a higher level and describe my problems in detail with research to back up any looks of disbelief. I personally enjoy the challenge of a well written manuscript in any form, but you have a real winner in this book. I have read most of the other authoritative CD books, but the authors didn't use the structured approach found in your book. I admit I'm very interested in trying to put together the Celiac puzzle so our offspring can enjoy a long, happy & healthy life. I was diagnosed 30 years ago when my fourth (and final) daughter, Gretchen, was born. My whole world collapsed until a doctor at Henry Ford Hospital recognized the "non-tropical sprue" and sent me to a gastro from Hong Kong. This man saved my life. I had extremely low Vitamin D - I was slowly losing the perabulatory movements. He recognized rickets and started injections. Sure, I have bad winters now, but at least I know it will end.

If there is anything I can do to help, please let me know. I finished your book in 1 night!!!!! I had written to some bloggers and websites encouraging people to buy your book. I'll get busy and steal some time to do some more.

Thank you for caring,
~Rose MaryBenton, KY
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Cleo: The book provided more scientific insight into the unknown territories of folks diagnosed with Celiac.
~Clift B.Austin, TX
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I have used the book to check symptoms to see if they are related to my CD or just "old age". It has also been most helpful when others call asking about similar problems. In short. . I find the arrangement by symptom and systems most helpful! Thank you for an unusually helpful publication.
~Mimi F.Kearney, NE
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Dear Cleo, I have been "sick" most of my life (I turn 40 in July) with random things, too many to list here. I have been really sick the last 10 years, but started feeling as though I was "dying by the inch" in 2004. I finally broke down and went to my primary when PVC's where occurring every 5-10 seconds that felt as though my heart was going to jump right out of my throat. I had many other random MS type symptoms, but the severity of the PVC's were what scared me the most, that is until 2006. I began to have many gastro symptoms that kept me in the bathroom several times a day with alternating elimination problems, I couldn't keep food down, and pain in the left side of my swollen, hard, tender abdomen every time I ate. I had an EGD and colonoscopy on 2/15/07. The three days before the test were the best I had felt in 4 years. Since I worked in Oncology and was used to seeing patients doing prep for them, I put myself on clear liquids 2 days before the Go-Lytely (sp?). So, I was gf without knowing it for 3 days prior to testing. When I woke up the morning of the test I realized whatever was bothering me had lifted..I hadn't thrown up, the mental fog had lifted, and my stomach pain was gone! My hubby made me go ahead and go to the test anyway, darn him! The doc said I didn't have celiac (I had no idea what he was talking about at the time), but that I had IBS, a hiatal hernia, GERD, and diverticulosis. He gave me a script for Zelnorm and said that should level out my alternating d/c problems in 3 months or so. As soon as I added food back in 2 days after the test the symptoms started all over again: pain, vomiting, reflux, alternating d/c, fog, dizziness, etc..... The Zelnorm didn't do anything but send me the other direction where I basically had no control over my bowels. Not a good thing when you're working 12's at a hospital in direct patient care, especially in Oncology! :) A month later a co-worker told me it had been recalled! I called the doc and they said they stand by their diagnosis and to just follow the IBS diet. I tried eliminating all the things it recommended, to no avail. At this point, I got down on my knees and begged God for an answer. I asked Him to send me an answer however He wanted and I would be listening. I happened to go shopping, which I hardly ever do because I hate it, and while waiting in a long line I saw a magazine cover that listed my symptoms almost to a "T"! I took it home and it talked about gluten sensitivity and celiac disease! So, this was what he was talking about! My husband read it and said it sounded just like me! I tried the diet and 3 days later I stopped throwing up and my stomach pain subsided! I called my doc and they said they still stood by the original diagnosis and I didn't need to be on a gf diet! I told them I was just letting them know out of courtesy so they could put it in my file, my guess is they didn't bother with it. I've never spoken to the doc personally since the day of my testing, and never was told to have a follow up visit either. Some doc, huh? Anyway, after going gf and using the links in the article I was led to a local celiac support group. The only meeting I have ever been able to attend they mentioned your book! I promptly signed on and got a copy for myself! It's the best money I've ever spent! I have several other celiac books and it is by far my favorite! The brief explanation of celiac and the GI tract in the beginning are very thorough but easy to understand. I absolutely LOVE the charts and tables though, and the fact that you have recommended foods on the side to help with the deficits! The tables have given me answers to the random symptoms I've been plagued with over the years, most of which have subsided and eventually disappeared over the last year of my gf journey! It wasn't all in my imagination, and I'm not a hypochondriac! I think your book should be required reading for every student entering healthcare, in every field. I tell every nurse I know about your book, as I've noticed they are much more open to learning than most docs I know! As a result of your book, six of my immediate and extended family members have gone gluten free and are feeling better than they have in years! We are so grateful for your work! We feel as though your book has literally saved our lives! Again, thank you SO much! I am wondering, since I have my own business, could I buy your book wholesale for resale? Please send me any details you have on how to become a distributor, I am definitely interested! ~Tammy Wade, Via Internet
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Thank you for your email, Cleo! I was diagnosed with Celiac Disease in October 2004. Since the time of diagnosis I have been reading everything I can find regarding Celiac Disease and Autoimmune Diseases. Your book has been the most informative and complete book that I have found. I appreciate the format and the extensive information included in it. I have an extensive library and have loaned your book to others in similar heatth situations. Your book has been utilized by many, and for all that have read it comes a feeling of hope. Thank you for this book!

The book will help doctors to:
1. Recognize signs of Celiac disease leading to potential diagnosis2. Be on the lookout for other conditions (deficiencies, etc ) especially if the history suggests the person has had the Celiac disease for an extended period of time prior to diagnosis.
My doctor thought it silly that the ringing in my ear could be related to my Celiac disease. After some research, I found that ear ringing is related to B12 deficiency which can be related to Celiac disease.

I believe it was your book that prompted me to have the doctor test for levels of other nutrients in my blood at the same time he tests for iron.

This is a book for all family doctor's, GPs and internists.

This book is also good for Celiacs, provided they do not have hypochondriac tendencies.

~Kevin G.South Bend, IN
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I am slowly learnng more about how it has affected me. Once I converted over , any wheat has more impact.
~ John R.Fullerton, CA
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I use the book as a reference. I see many people in my nutrition counseling practice that often have some very unusual conditions. I look up the conditions to see if there is a relation to celiac disease and most of the time there is. I will often show the patient the pertinent information to encourage them to get tested.
~Connie R.Windham, NH
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I highly recommend this book to not only someone diagnosed with Celiac's disease but I also think every physician, hospital and medical provider should have and read this book. This should be required reading for all medical students! I only wish this book had been available 10 years ago or before... This is by far the most comprehensive and helpful book on the topic. 5 STARS!!!
~Suzanne R.Sterling, VA
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I have found the book to be a great resource in opening discussions with physicians about Celiac Disease. Most helpful is to discuss the non-GI manifestations of CD which are missed by many physicians. Most of my physician base deals with the "traditional" symptoms of CD which include diarrhea, iron deficiencies and absorption issues but this book has been helpful in finding and identifying those "silent" symptoms. Target OB/GYNs, pediatricians, etc. with this wonderful book.
~Dennis GaroneTSS Prometheus Laboratories203-417-2558dgarone@prometheuslabs.com
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I've just started reading this book and looking at the tables. I can tell already that it is my number one resource for Celiac Sprue, one I've been waiting for. The content is in depth and concise.
~Melissa Snow, RD, LDWellness With Nutrition, Portsmouth, NHmelissasnow@verizon.net
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Dear Cleo, I was so pleased to receive your book Recognizing Celiac Disease. The book is incredibly comprehensive and will indeed serve as an important guide for so many individuals. Nashville has a wonderfully well-organized celiac support group, and I will share the news about your book with them and many others here. Gratefully in Christ,
~Sr. Dominic Mary, O.P.Nashville, TN
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I have really been enjoying your book, Recognizing Celiac Disease, and just referred to it again yesterday, in response to a client's diagnosis query.
~Nancy Muir, M.Ed., R.D.
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I really enjoyed the book, especially the "Manifestations of Celiac Pages". I wish I could buy the book for all the Dr's in my hospital, but don't worry, they will be hearing from me when I suspect celiac disease. Keep up the good work.
~Gloria J Duy RD LDN (Celiac)Clinical DietitianOSF Saint James-John W Albrecht Medical CenterPontiac, Il